suspected PANDAS - on penicillin

[TracyRee]

So we are in the very very beginning stages of researching PANDAS. About 2 weeks ago my 4.5 year old son had a fever and sore throat, saw the doctor but no throat culture at that time. The next day he started urinating obsessively. (sometimes once a minute) We tested his urine for infection, blood for diabetes, had an ultrasound and considered Pollkiuria. The degree of frequency concerened me enough to research a bit and I came across some PANDAS info online.

 

Knowing he had been sick right when the frequent urination started and having some past issues that fit the description, I talked to his doctor and took him in for a strep test. We were both surprised when the rapid test came back positive, it had been almost 3 weeks since the fever and he's showing no signs of strep at all.

 

The doc prescribed penicillin, which he's been on for 2 days now. The prescription is for 10 days.

 

I'm thinking I'll need to have him tested for strep again to be sure the penicillin took care of it, when do I need to do that? What's the enxt step if he's positive again? Will the rapid test be enough?

 

Also, about how long will it take to see some behavioral changes? I know that the problem isn't the strp bacteria, but the antibodies, so how long before the antibodies reduce enough to give him some relief?

 

Thank you in advance, I'm a bit overwhelmed by all the info and trying to figure out where he fits into all of this.

[P_Mom]

Hi Tracey,

I just quickly wanted to say that I would get your child on a different antibiotic if I were you...Augmentin or Chephalexin. Penicillin is failing ALOT lately (it failed in both my kids with the strep onset of PANDAS). If your child indeed has PANDAS, and it sounds like a definite possibility, you want to make sure the strep is eradicated, no fooling around with basic Penicillin.

 

kelly

[EAMom]

Hi Tracey,

 

Whatever antibiotic you choose, be aware if you culture too soon after stopping you may get a false negative. You need to give it a good 4 weeks after the last dose to reculture.

 

Or, you could culture sooner, and then if it's negative, culture again several weeks later to make sure.

 

I'm guessing the pen. won't quite cut it. There is also a lot of failure with amoxicillin. I agree with Kelly about doing the Keflex or Augmentin. If your son is still positive 1 mo. after finishing one of those then I'd rec. Azithtromycin. Your son may be a strep carrier (like my kids), esp. if he was still positive 3 weeks after FEVER. Strep carriers tend to have intracellular strep which many abs can't reach. Azith. has worked well for us.

 

I would also culture other family members (esp. siblings). Change toothbrushes/toothpaste 2-3 days into the abs. I also don't let my kids share toothpaste.

 

I would rec the 48-72 hour culture if the rapid is negative.

 

My dd had the same symptoms at 4.5...sudden onset urinary freq, urinalysis/urine culture was neg. Nobody ever did a throat culture even when she developed a high fever 2-3 days later! We didn't even know about PANDAS until last March when our dd had to be hospitalized for acute food refusal/anorexia nervosa (7.5 years old!) with OCD/tics/tantrums/depression/psychosis....turns out both her and her sister culutured positive for strep (2mo. after PANDAS dd had the FEVER and behavior change.)

 

You are on the ball for figuring out about PANDAS so soon in the game!

[peglem]

So we are in the very very beginning stages of researching PANDAS. About 2 weeks ago my 4.5 year old son had a fever and sore throat, saw the doctor but no throat culture at that time. The next day he started urinating obsessively. (sometimes once a minute) We tested his urine for infection, blood for diabetes, had an ultrasound and considered Pollkiuria. The degree of frequency concerened me enough to research a bit and I came across some PANDAS info online.

 

Knowing he had been sick right when the frequent urination started and having some past issues that fit the description, I talked to his doctor and took him in for a strep test. We were both surprised when the rapid test came back positive, it had been almost 3 weeks since the fever and he's showing no signs of strep at all.

 

The doc prescribed penicillin, which he's been on for 2 days now. The prescription is for 10 days.

 

I'm thinking I'll need to have him tested for strep again to be sure the penicillin took care of it, when do I need to do that? What's the enxt step if he's positive again? Will the rapid test be enough?

---I think it varies from child to child. My daughter would test + as few as 3 days after finishing the abx. I got her tested whenever the behaviors returned and could tell pretty quickly(w/in 24 hrs) if the abx was working just judging by behavior. The rapid test is enough if it turns up +, but I'd send it off to be cultured if it comes up neg.

 

Also, about how long will it take to see some behavioral changes? I know that the problem isn't the strp bacteria, but the antibodies, so how long before the antibodies reduce enough to give him some relief?

--Like I mentioned above, my daughter got relief pretty quickly w/ abx. I'm not so sure this is autoimmune in my child's case because immune testing showed that her immune system was not great at producing antibodies. They haven't identified an immune marker for PANDAS (or dx would be so much easier). Strep does produce neurotoxins as waste products, which I think could be another explanation or at least an exacerbating problem. But, antibodies or not, it also seems to be highly variable from child to child how long healing takes.

 

Thank you in advance, I'm a bit overwhelmed by all the info and trying to figure out where he fits into all of this.

[TracyRee]

Ugh, I was afraid penicillin wasn't going to be the best choice, wish I'd have known that when prescribed. Our docotr is so receptive to this PANDAS thing, but I don't want to step on his toes and question every single thing he does, ya know? I was the one that suggested PANDAS to begin with, faxing some info and requesting a strep test.

 

How can I call him up and tell him I'd like a different prescription without stepping on his toes too much?

 

 

 

 

So we are in the very very beginning stages of researching PANDAS. About 2 weeks ago my 4.5 year old son had a fever and sore throat, saw the doctor but no throat culture at that time. The next day he started urinating obsessively. (sometimes once a minute) We tested his urine for infection, blood for diabetes, had an ultrasound and considered Pollkiuria. The degree of frequency concerened me enough to research a bit and I came across some PANDAS info online.

 

Knowing he had been sick right when the frequent urination started and having some past issues that fit the description, I talked to his doctor and took him in for a strep test. We were both surprised when the rapid test came back positive, it had been almost 3 weeks since the fever and he's showing no signs of strep at all.

 

The doc prescribed penicillin, which he's been on for 2 days now. The prescription is for 10 days.

 

I'm thinking I'll need to have him tested for strep again to be sure the penicillin took care of it, when do I need to do that? What's the enxt step if he's positive again? Will the rapid test be enough?

 

Also, about how long will it take to see some behavioral changes? I know that the problem isn't the strp bacteria, but the antibodies, so how long before the antibodies reduce enough to give him some relief?

 

Thank you in advance, I'm a bit overwhelmed by all the info and trying to figure out where he fits into all of this.

[colleenrn]

TraceyRee,

I know this may be easy for me to say and harder for you to do, but do not worry about stepping on your doctor's toes for suggesting what is best for your child. Penicillin for children with PANDAS is not the optimal choice and your son needs what he needs regardless of how you get it. I went along with my doctor for almost a year when he only wanted to use Penicillin and Amoxicillin and my daughter suffered for it. SOME kids do OK with pen/amox, but more do not. I would definitely suggest Augmentin or a cephalosporin (Omnicef, Keflex). You should see a big improvement within a few days. If not, there are others. My daughter used to test positive for strep a few days after completing a ten day course of Pen and Amoxicillin. Have you seen any improvement since he beagn the penicillin?

Colleen

[TracyRee]

I can tell he feels better, he's not as emotional and playing independently for the first time in a long while.

 

The frequent urination may have gotten a tiny bit better, but not drastically so.

 

I'm going to call in the morning and ask about the Augmentin or a cephalosporin. I think my doc will be fine with it, I just want to be careful about how I present it so as not to come off like I'm questioning his ability. I think as long as I say that I've been researching PANDAS like a fiend and have heard that PANDAS kids respond better to one of the other abx, he'll be fine. He openly admittted he has no experience in this but was still very receptive to the diagnosis, so I don't think he's the type that will get his ego bruised too easily.

 

 

 

TraceyRee,

I know this may be easy for me to say and harder for you to do, but do not worry about stepping on your doctor's toes for suggesting what is best for your child. Penicillin for children with PANDAS is not the optimal choice and your son needs what he needs regardless of how you get it. I went along with my doctor for almost a year when he only wanted to use Penicillin and Amoxicillin and my daughter suffered for it. SOME kids do OK with pen/amox, but more do not. I would definitely suggest Augmentin or a cephalosporin (Omnicef, Keflex). You should see a big improvement within a few days. If not, there are others. My daughter used to test positive for strep a few days after completing a ten day course of Pen and Amoxicillin. Have you seen any improvement since he beagn the penicillin?

Colleen

[peglem]

Another idea is to wait out the 10 day course of the antibiotic, wait 5 days and retest for strep. If the Pen didn't clear it up, the doctor will likely be very open to trying a different abx.

[TracyRee]

Another idea is to wait out the 10 day course of the antibiotic, wait 5 days and retest for strep. If the Pen didn't clear it up, the doctor will likely be very open to trying a different abx.

 

Thanks, I'm going to try and get one of the others though. I'm driving myself crazy worrying about all of this, being 6 months pregnant isn't helping. I would just feel better knowing he was already on the abx known to work better.

 

Anyone know if it's a problem to switch abx midstream like that though? Wonder what the doc will say about that....

[pmoreno]

Another idea is to wait out the 10 day course of the antibiotic, wait 5 days and retest for strep. If the Pen didn't clear it up, the doctor will likely be very open to trying a different abx.

 

Thanks, I'm going to try and get one of the others though. I'm driving myself crazy worrying about all of this, being 6 months pregnant isn't helping. I would just feel better knowing he was already on the abx known to work better.

 

Anyone know if it's a problem to switch abx midstream like that though? Wonder what the doc will say about that....

 

Yes, I've often wondered if stopping a particular abx before the end of its course could create some resistant bugs. Even though you are starting a new one - they may be specific to different ones. You'll have to ask the doctor about that and hope that you can trust his judgement. I would probably do what PEGLEM suggests - finish up the abx and retest. My heart goes out to you and others on this forum whose children have the frequent urination problem . We haven't had that yet (and hope we don't) - it seems like it has to be one of the worst.Pat

[michele]

Tracy,

Where do you live? Is this your ped working with you? You were very fortunate to find a Dr. receptive to PANDAS from the beginning. A girl I know does give her son Pen VK long term but he has gotten strep while on it a couple times. Then they give him a stronger antibiotic like Zith when he gets the strep for three weeks. Then return to the Pen VK. My son has been on several antibiotics long term. While on Pen VK and Augmentin he still had the urination frequency and the tics and moods. Then when we switched to Omnicef the urination frequency has completely left. However he has still gotten the tics, anxiety and mood episodes when sick or exposed to strep. I wonder if he was on the Keeflex or Azith if he would be completely improved but have not been able to convinve a Dr. of the importance of trying the others. Best of luck. It sounds as if you have a good Dr. on board.

 

Another idea is to wait out the 10 day course of the antibiotic, wait 5 days and retest for strep. If the Pen didn't clear it up, the doctor will likely be very open to trying a different abx.

 

Thanks, I'm going to try and get one of the others though. I'm driving myself crazy worrying about all of this, being 6 months pregnant isn't helping. I would just feel better knowing he was already on the abx known to work better.

 

Anyone know if it's a problem to switch abx midstream like that though? Wonder what the doc will say about that....

[TracyRee]

LOVE our doctor! He was totally fine with changing the prescription, I'm always amazed at how nice he is...how easy he is to deal with.

 

We live near Nashville, and yes, our doctor has been very receptive to helping.